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Mar 11, 2014

I Dream of a Cure for Autism

Autism awareness, what is it? I was eleven the first time I heard the word autism. At the time I had no idea it would become the focal point of my world. I’ve been living with autism almost half my life, even before that, I’d read about it and discussed it in school, and I don’t know what autism is. I know what is is to me. I know my son’s version of autism inside out and upside down. Literally, because sometimes inside out and upside down is how it makes me feel. Even that is fluid and subject to change without warning. When I see or read about so-called experts or even parents claiming to give definitive answers in an effort to inform the public, I admit I tend to give them the side eye.

If you’ve met one autistic person, you’ve met one autistic person. Likewise, if your child or loved one is autistic, your direct knowledge of autism will be limited to them or anyone in their circle. In other words, “All autistic people…” never applies.

I’m not saying that there isn’t common factors, of course there can be. There has to be for diagnosis, but they are so varied in degrees comparing one autistic person to another is like comparing an orange with an octopus.

There’s been a lot of talk on social media about autism supports and how autistic people deserve a say in how they are achieved. It seems the voices shouting loudest are those who can speak and they are looking out for themselves. Naturally. This is the way of the world and it always will be. In the autism community it means people living what I would consider virtually normal lives presenting themselves as the face of autism. Something that can be beneficial, that should be embraced, and celebrated.

Like others in the community, I’m 100% in favor of extensive supports for those living with autism and autistic people. I expect respect for autistic folks and their families. Unlike some, I am also 100% in favor of a wiping out autism in future generations. That means finding the causes and cure.

Awareness, means awareness for all. Those who can speak out, who love their autism. But also those who can’t speak, who will never have the life they dream of, who are limited by autism in a way they otherwise wouldn’t be.

Technically, autism is a neurological disorder and not an intellectual disability. But that doesn’t take from the fact autism can be debilitating. It can prevent someone from reaching their potential. This isn’t about society being limiting, which it can be. It’s about being disabled by autism to such an extent a person cannot and will never live an independent life. That what they achieve is in spite of autism, not because of it. Their achievement is cause for celebration, not the autism.

I used to think of autism as a glass wall. I still do in many ways. My son is someone I can see but, more often than not, can’t touch.

It’s been a difficult few months since school finished. Even before that, the last few years have been unexpected. Behind the few achievements like graduation and going to the local shop, there has been significant regression. While I used to think of us standing on either side of a sheet of glass, these days autism feels more like an endless race.

In this race, my boy is dashing ahead at lightening speed and with boundless energy. He never tires and he’s oblivious to anything around him. He doesn’t see dangers, can’t accept direction. He simply runs.

Meanwhile, I scramble behind. Except I don’t run unencumbered. I’m juggling, dodging tennis balls fired at my head, and trying to avoid the massive cracks in the ground where he has slammed his foot down too hard, without even knowing.

I can never win this race and he can never stop running.

So, when I see people call for halting research into a cure in the autism community, for people to accept and see the positive, I get a little annoyed. For us, there is no positive. There is nothing redeeming about autism for us. My son isn’t a genius because of his autism, he is debilitated by it. When I see someone claiming autism is to be embraced because they have a good life with kids and wife, a Phd., published books, and glittering careers in sciences or tech, that isn’t autism as I know it. Not even close.

That person is capable of a choice to remain how they are, should the situation arise. They are not caged inside autism like my son. I doubt a cure will be found in my son’s lifetime, but I will continue to hope for it. Even if there are those who would prefer I didn’t.

6 comments
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My son is also autistic, but I'm one of the 'lucky' ones. His long-term prognosis is good in that we have the realistic hope that he can be independent someday. I almost feel guilty as I know there are so many families that don't have (and can't have) that flicker of light at the end of the tunnel. For them, it will always be a worry and a struggle, and it's not fair.

Someday, there WILL be a cure or a treatment or a means of prevention. I hope it's sooner than later.

I'm glad for your son and your family. When I hear the word "autism" followed by the news the person has some hope of independence, it's almost like taking a breath. It's good news because I wouldn't wish the hardship of knowing there is no hope of that on anyone.